My Diabetes Story

Hi, my name is Clo and im new here so I thought I’d share my story.

When I was 8 years old I started getting sick, I was told initially it was the flu. When I didn’t start getting better my parents took me to the doctor about once a week. They did not check my blood sugar any of those times even though I had all the tell tale symptoms. Throwing up, dry skin that would crack and bleed, wetting the bed, sleeping all the time, excessive weight loss and drinking water excessively (I remember I would have dreams where I was just chugging water non stop!) We found out about my diabetes during a dance class I was in. One of the moms noticed my hands bleeding from dry skin and weight loss and asked my mom about other symptoms i had as her niece had just been diagnosed as type 1. We went over to her house after class and checked my blood sugar that was over 600. My mom immediately took me to the hospital where I was officially diagnosed. Everything went pretty much downhill from there. My parents relied on me to take care of my health and did not help much other than asking me what my blood was and asking if I dosed. As a kid who did not understand the gravity of my situation I would lie and tell them good numbers and that I did dose. The reality was that I would check my blood maybe once a week and only give insulin when I felt nauseous.

That situation went on throughout my whole adolescent. I only ended up in DKA once after diagnosis when I was 15. Every time I went to the endo my A1C was in the 12s, but nothing changed. Not a single doctor questioned my parents. I would always get told “You need to check and dose more” and that was it. I would get yelled at after every appointment for making my parents “look bad”. There were times that I didn’t give insulin for days. (partly due to my ignorance of my situation and partly to my severe depression)

When I was in my late teens my father was diagnosed with stage 4 Colon Cancer. With my parents being divorced and it only being me and my dad at home, I became his ultimate care taker. My life soon revolved around him and his health, I felt like I was failing my family by not keeping him alive. At this point I was 18 years old and had not seen an endo in almost 2 years, i would get my insulin from a primary doctor who never questioned why I didn’t get it from an endo. I was severely under weight, throwing up constantly, and felt like I had no support in anyway. I relied heavily on self medicating. I was not in a good spot mentally or physically.

After my dad passed away when I was 19, I moved out on my own. I was able to slowly distance myself from my family. I started to really understand the situation I was in and that I needed help. It took so much to reach out to someone. I truly felt like I had dug myself too deep into this hole of self destruction and that there was no way out. I was embarrassed. I felt like I had failed. The first 2 Endocrinologists I saw as an adult made me feel even worse. It was like they were speaking at me and not with me. I would try to explain my situation and I felt judged and pushed aside. This caused me to dig even deeper into my self destruction. I avoided doctors all together and continued to rely on self medicating.

Alittle over a year ago I decided I was sick and tired of being sick and tired. There had to be something more than what I was feeling. So I tried again. I got a new primary doctor and he has saved my life. This was the first doctor that ever made me feel like this wasn’t all my fault. He was sympathetic, understanding and wanting to help. He referred me to an Endocrinologist on his team who was exactly the same. I honestly never thought I would have anyone in my life that truly wanted me to be healthy. I was able to take diabetes education classes and found online support through Reddit and Instagram. I cut out people who enabled my bad habits. I actually put in effort to be better. It was truly insane how much hope I had for the future now. My life took a complete 180.

After a few months of seeing my primary doctor and endo monthly and getting my new dosages/prescriptions my A1C was in the 9s! I know thats not a good number but I had never been that low before. I had a completely new out look on life and I believed I could be better. With the encouragement of my new doctors I took the next steps and seeked help through psychiatrists, different therapists and multiple rehab programs. My A1C is currently at 7.2 and I have been sober for almost 7 months. It was a very slow moving process to get where I am today and I’ve had a few set backs. I do not know how I am alive today knowing how I had lived before. I truly am blessed to be here. I now fully believe that things can change and they can get better for anyone. Having a support system and cutting out the toxic people in my life changed everything.

But thats about it. There’s a long list of issues I am still working through and I still have a long way to go but I’m looking forward to being apart of this community and bettering myself even more! I hope everyone is staying safe during these crazy times were in :heart: God Bless you all.

(Side note sorry I edited this post so many times. Noticed typos and realized I put 8 months sober instead of 7. Don’t know if yall can even see i edited it but thought I’d explain just in case lol)

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Hi @clo, welcome here! Thanks for sharing your story!

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Glad you are here. You’ve had a rough go. Thanks for telling your story.

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Awesome job on your progress!!

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@Clo, welcome to the site, really happy you are taking control of your situation and getting better. One thing my family has learned through this diabetes journey with my son is to not judge so quickly. Your A1c is what it is. Yes, you should have goals, but don’t judge yourself so harshly. 9 is better than 12, 7 is better than 9, but when we get an A1c done we really think about it not like a judgement, but just an indicator of when we need to invest more time and energy in the management. It is a journey, setbacks are inevitable, but the journey doesn’t have to be a lonely one. Welcome to FUD!

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Welcome, @clo. You have found your way to a supportive and knowledgeable community. :blush:

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@Chris I like that out look! I tend to be hard on myself regarding high bloods. Still learning to live effectively with diabetes and practicing positive self talk. I feel like i learn something new everyday. Im so happy I found this group!

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@Boerenkool thank you! Im looking forward to being on here with you guys!

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@jim26 Thank you so much!! Im proud of how far I’ve come.

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@clo, welcome. First off, my sincerest apologies for how diabetes was introduced to you. No child your age at the time should have ever been expected to take on that much responsibility and be placed under such great stress and pressure. Our son, Liam, was diagnosed at 2 and now at 6 he is only now beginning to understand that he is different than normal kids in this regard. And although he helps, we would never dream of dumping this responsibility onto him until he is fully ready for it. In the meantime it is our honor and privilege as his parents to not only take care of him but also to teach him how best to care for himself when he does feel like he’s ready. We don’t expect to “hand him the reins” until he is nearing his teen years. So, if no one has ever apologized to you before, please accept my deepest sympathies and apologies for that great injustice you endured.

Secondly, I wholeheartedly agree with @Chris and others, always look forward, never backwards, where your a1cs are concerned. You have a great number right now and although you had a lot of rough years, due to no fault of your own, you have done an amazing job of taking your health and you’re life in your own hands and are really a rock star in my eyes.

Keep growing, learning and being an amazing example to others that it is never too late.

Thanks so much for your touching story.

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Welcome and thanks for sharing your story. This is a great place to learn, share and get support.

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My heart goes out to you, as you have had a tough road to travel primarily on your own without support from parents to help you manage your diabetes. I’m so thankful you found good doctors and this diabetes community, too. Welcome!

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Welcome, @clo. Thank you for sharing your story. Glad you found this place. :sunflower:

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@ClaudnDaye Thank you so much for your kind words. It really means so much. You sound like an amazing parent to your son, He’s very lucky to have you!

I agree I need to work on looking forward and not dwelling on the past. Its really hard to do at times. Im constantly reminding myself that the past is the past, but I’m not too sure I’m completely convinced of that yet. I still have alot of work to do regarding my mental health. I really appreciate everything you have said. Thank you so much.

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@clo A heartfelt welcome to you and I am very glad you’ve joined. Thank you for sharing your story. It’s taken courage and strength to find your path to focus on you and your health. Keep up the great work and congrats on 7 months of sobriety!

This forum is a wealth of information and we’re here to help.

It’s about progress, not perfection!

Lisa

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Powerful story, @clo. Except for the family-support part, you remind me very much of my second cousin (first cousin’s daughter) who is the only other T1 besides me in our large extended family, and who has struggled with addiction as well as T1. I got it as an adult—I was 28 and in grad school—so I didn’t go through the experience of dealing with the transitions of adolescence and young adulthood at the same time, and what a great challenge that is. My own daughter was a heroin addict for 15 years, now sober for 12, so this stuff is deeply personal to me and I don’t judge. I’m so glad to hear you’re on the mend, both in terms of sobriety and getting your control of diabetes on track. My metaphor for T1 is that from the day your were dx’d you were sentenced to be a tightrope walker, only you have to be one 24/7 and nobody ever trained you how to do it. So there are times you’re just going to fall off, and there’s no shame in it—it’s not humanly possible to be perfect at it; you just have to get back up there again and keep putting one foot in front of the other. I applaud you for the strength and courage you are showing, and thanks for sharing your very moving story.

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Welcome to the group @clo . Thank you for sharing the story. This is a wonderful, supportive community.

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@drbbennett its been a long road and its still a pretty tough road im on. Im struggling quite a bit most days, but Im proud of the progress I’ve made. Thats amazing your daughter has been sober 12 years! Please give her my regards, its so hard getting out of those habits. I hope I am able to say its been that long for me one day. I really like that metaphor! I am learning that perfection should not be goal but rather managing to the best of my ability. I struggle to understand that I will have off days and that it is normal to have those days. Thank you so much for your kind words. The encouragement and kindness of everyone here is unbelievable. Im so happy i found this community.

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Wow. I’m so sorry you went through so many years with no support from anyone, especially your doctor. He shouldn’t have a license. I’m incredibly impressed with how you’ve turned everything around and are headed in the right direction and that while it’s still an uphill battle, it’s no longer a mountain, but a hill. Keep going! You’re amazing! :smiling_face_with_three_hearts: :star_struck: :fist_left: :fireworks:

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Its crazy to me how much a good support system changed my life so drastically. You’re right, its not a mountain anymore as I feel like I’ve passed the hardest part of the battle. I just need to keep fighting up the hill! I appreciate all you’ve said, Thank you so much!

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